Date: 2017-06-28

This is a MGCK (MG consortium in Korea) web registry progression report.
Dataset retrieval: 2016-11

You can download dataset (.dump, .sql, .csv) and script files (.r, rmd) from here.

List of contents

  1. Demographics
  2. Diagnosis
  3. Course
  4. Remission
  5. Crisis
  6. Treatment
  1. Outcome

1. Demographics

1) Number of patients across centers

SNUH BRMH KUAH SMC IUH CAUH
171 41 39 17 3 1

2) Age distribution

2. Diagnosis

1) AChR-Ab

2) MuSK-Ab

3) Thymus

4) Thymoma: Masaoka staging and WHO classification

3. Course

1) Type: ocular vs. generalized MG (at onset & presentation)

2) MGFA at entry (first visit) and enrollment (to the registry)

3) Time course (onset, presentation, entry, dx, enrollment, secondary generalization)

Summary

##  onset2presentation presentation2entry entry2enrollment   
##  Min.   :-26.000    Min.   :-32.000    Min.   :-23572.00  
##  1st Qu.:  0.000    1st Qu.:  0.000    1st Qu.:     9.50  
##  Median :  1.000    Median :  1.000    Median :    25.00  
##  Mean   :  8.125    Mean   :  7.643    Mean   :   -50.54  
##  3rd Qu.:  5.000    3rd Qu.:  3.000    3rd Qu.:    54.50  
##  Max.   :261.000    Max.   :228.000    Max.   :   249.00  
##                                        NA's   :5          
##     onset2dx       onset2secgen   
##  Min.   :  0.00   Min.   :  1.00  
##  1st Qu.:  1.00   1st Qu.:  3.00  
##  Median :  3.00   Median :  7.00  
##  Mean   : 12.76   Mean   : 20.88  
##  3rd Qu.:  9.00   3rd Qu.: 17.00  
##  Max.   :283.00   Max.   :195.00  
##  NA's   :1        NA's   :229

Patients (pt_serial_no) in whom the time is < 0 (should be input error)

  • from onset to presentation: 1192, 1103, 1229, 1087, 1250
  • from presentation to entry: 1226, 3057
  • from entry to enrollment: 1057, 3047, 1137, 1073
  • from onset to diagnosis:
  • from onset to secondary generalization (in cases of ocular onset):

Time distribution

4) MG composite score at enrollment

Number of patients (second row) across the range of MG composite score at enrollment (first row)

0 1 2 3 4 6 7 8 9 NA’s
107 5 5 9 11 1 2 2 2 128

5) Change of MG composite score during follow-ups

MG composite scores are available in 161 visits in 145 patients.

Number of visits (MG composite score are avaiable) and corresponding number of patients.

0 1 2 4 5 8
127 140 2 1 1 1

When only the visits after 2014-01-01 were considered,

MG composite scores are available in 123 visits in 108 patients.

Number of visits (MG composite score are avaiable) and corresponding number of patients.

0 1 2 4 5 8
164 104 1 1 1 1

Changes of MG composite scores in patients whose MG composite scores are available more than once.

6) Change of MGFA class

MGFA class are available in 346 visits in 259 pateints.

Number of visits (MGFA class is avaiable) and corresponding number of patients.

0 1 2 3 4 5 8
13 192 56 7 2 1 1

When only the visits after 2014-01-01 were considered,

MGFA class (or post-intervention status) is avaiable in 253 visits in 176 patients.

Number of visits (MGFA class or PIS is avaiable) and corresponding number of patients.

0 1 2 3 4 5 8
96 118 48 6 2 1 1

Change of MGFA class

4. Remission

Number of patients who achieved remission
Time to remission
Duration of remission
Number of relapse
Time to relapse

5. crisis

Number of crisis: 28
Number of patients who got at least one crisis: 20

Number of crisis (first row) and correponding number of patients

1 2 3
13 6 1

Time from onset to crisis (excluding cases in which time to crisis is longer than 60 months)

ICU stay (days) d/t MG crisis

##    Min. 1st Qu.  Median    Mean 3rd Qu.    Max. 
##    0.00    7.00   12.00   14.91   22.75   38.00

6. Treatment

6.1 Thymectomy

Number of patients who got thymectomy for non-thymomatous MG: 5 Number of patients who got thymectomy for non-thymomatous MG: 55

Time from onset to thymectomy for non-thymomatous MG

Thymectomy: type of resection
For non-thymoma,

## 
##        transcervical_basic     transcervical_extended 
##                          0                          0 
##       transsternal_classic      transsternal_extended 
##                          0                          0 
## transcervical_transsternal   videoscopic_classic_VATS 
##                          0                          1 
## videoscopic_extended_VATET              robot_surgery 
##                          0                          2 
##                     others 
##                          0

For thymoma,

## 
##        transcervical_basic     transcervical_extended 
##                          0                          0 
##       transsternal_classic      transsternal_extended 
##                         22                         10 
## transcervical_transsternal   videoscopic_classic_VATS 
##                          0                          2 
## videoscopic_extended_VATET              robot_surgery 
##                          0                          6 
##                     others 
##                          1

6.2 Pyridostigmine

6.3 Corticosteroids

Number of patients treated with iv methylprednisolone: 3 Number of patients treated with oral prednisolone: 153

Changes of oral prednisolone dose

6.4 Immunosuppressive agents

Number of patients treated with immunosuppressive agents: 96
Number of patients (second row) in whom N (first row) different immunosuppressive agents were used in total

1 2 3 4
63 25 7 1

Use of immunosuppressive agents: proportion

Number of patients in whom the dates of start and end are both specified: 70

Side effects of immunosuppressive agents (0; no, 1; yes)

0 1
179 26

6.5 IVIG

IVIG was treated in 51 occasions in 29 patients.

Number of IVIG use (first row) and corresponding number of patients.

1 2 3 4 8
20 3 3 2 1

Number of occasions in which side effects of IVIG were reported:

51

6.6 Plasmapheresis

Plasmapheresis was used in 33 occasions in 29 patients.

Number of plasmapheresis (first row) and corresponding number of patients.

1 2 3
26 2 1

Side effects of PE (0=no; 1=yes)

##  0 
## 33

7. Outcome

Follow-up duration: from first visit (enrollment) to date close

##    Min. 1st Qu.  Median    Mean 3rd Qu.    Max. 
##    -3.0     0.0     0.0   204.1     8.5 23610.0

When only the patients with 0 <= fu duration <= 60 months were considered,

MGFA class at the end of f/u

MG composite scores at the end of f/u

If you have any question or suggestion, contact me at nrhong@gmail.com

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